A mom with a movement disorder blogs about life with a typical daughter and a son with special needs including a left arm with a shrinking tumor. Both kids delight and challenge me everyday. "May you live in interesting times!" is a Chinese saying that can be considered both a blessing and a curse. I always live in interesting times. Lately I've tried to make this into a more of a recounting of the boons in my life aka the things I have to be thankful for.

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Thursday, July 14, 2005

Yesterday afternoon was so exhausting, I didn't even want to recap it until now. Little T, Special K and I all went to Little T's CCS OT apt. T's sitting up better and shrugged his left shoulder for the first time in front of the OT. The OT was reassuring about T bouncing back after his G tube operation.

Then we drove to the hospital and parked there. Then we walked to a little sushi box place and ate some sushi. My hand twitched and I spilled my Snapple all over the table. K said "Don't do that, Mommy." I said "I can't help it. I jerked."

Then we walked to Andronicos and bought some grapes at K's request, some teething biscuits and some Tetley tea. K and I ate grapes outside while T sucked on his teething biscuit. He really enjoyed it and made a huge mess. It reassured me that whatever's wrong with his throat or vocal cords, he does enjoy some eating things like a normal baby. Then we walked back to Pediatric Surgery and waited about 20 minutes until our appointment. That wasn't too bad, because they had two kids' movies playing and K made friends with someone and sat with her and watched a movie.

T was weighed at 7.45kg and 66.5 cm long. Yay he's still growing! Then we were shown a exam room and we sat there for literally over an hour. K was overdue for her nap. She was actually really good, considering how tired she was. But T got really bored and tired. He kept fussing. I tried to entertain T with games of peekabo and shake the baby toys. After a while that got old even for T. I also tried to keep K awake, because I knew she'd only have to wake up once the exam was over. If I'd known it was going to be an hour wait, I wouldn't have bothered. Finally she fell asleep with her head and tummy on the chair and her legs on the floor. She was that tired. When the NP finally came in, both kids were asleep.

The Nurse Practioner made no apology that we waited so long nor did she seem to notice Special K. She examined Little T briefly as he slumbered on. She said not asked really "Do you mind if I look at his [left] arm?" I said grumpily "Yes, I do. He's just fallen asleep." She left the room. Then 15 minutes later, the surgeon on duty came by and did notice Special K and gave her a pat on the back. She slept on. He said "Wow, she must be really tired." I said "Yes, we've been waiting here a long time." He apologised. Then a nurse showed me the MIC-GT which will be placed in T's stomach. This image shows two of them. As you can see, it's small. The surgeon puts an endoscope in his belly button then uses that to place the GT in his stomach. The plug is outside his stomach. The tube goes through the hole in his stomach and the balloon holds it in place. The entire thing comes out once every 3 months when it's changed.

Then we walked over to Hemo and got his (hopefully) last labs drawn through his Broviac. C wanted me to have T's doctor look at his arm. It feels harder now. I think it's probably muscle. C doesn't know. Anyway for the first time ever, she refused to come see him. It made me sad that she said no, but also happy that he's well enough that she can say no.

2 comments:

Dee
said...

A little girl in one of the therapy classes I help with has a GT. Her mom said it was a major help with her health issues. To look at her, you would never think she went through any issues. I hope it has the same results for T! P&PT!